VIDEO interview with Venezuelan gold mining union leader Manuel Montiel -- total 15' 54" in two parts!

Venezuelan gold mining union leader Manuel Montiel speaks to VHeadline Venezuela News about the amalgamation/unification of several trade unions towards a greater empowerment and efficiency in labor relations following what is described as disastrous relationships with USA (Idaho-based) Hecla Mining which was bought out last year by the Russian-owned Agapov Group's Rusoro Mining.

Montiel: Well, my name is Manuel Montiel, I'm the General Secretary of the union here in the Agapov Group company. We've reached an agreement ... signing a collective contract ... that benefits over 200 workers in the company. They've complied with almost all the
clauses ... 90% of the contract ... yearly bonus and other bonuses ... we're now on the savings plan ... a saving plan where each worker will have an account in the bank ... we have a housing plan which will start in January, we'll start building houses for the workers, we've reached many agreements (with Rusoro).

We're thankful for the investment that they have brought to Venezuela, this Russian investment, Rusoro Mining ... we're very happy as far as we've always reached many agreements to get our objectives ... the workers' objectives to defend the workers ... they're complying with us now, the (Christmas) presents to the children of the workers ... they've made a very good party for the children. We've accomplished our goals ... we'll start now (from January 5) receiving production bonuses ... we've got the company's compromise to pay a production bonus for the workers.

We're safeguarding our future with this underground mine ... this investment that Rusoro Mining is making here in Venezuela on the La Emilia field ... we're going to have a future ... we've been allowed to work this mine for 20 years ... it's a future for our families, our houses, our children.

We now have a health insurance policy which covers hospitalization, surgery and ante-natal medical assistance for our families and parents, which we didn't have before ... with this investment, we've achieved many benefits.

We welcome Russian investment here in Venezuela. We also represent Corporacion Ochentamil' workers ... also of the Agapov Group ... where we got many goals so far, like air conditioned buses for transportation, which we didn't have ... now we've got them.

Carson: As an union leader, how do you feel about transnational companies involved in Venezuela?

Montiel: As an union leader, I repeat, we welcome any investment as long as it comes with good objectives as was the case with this company, Rusoro Mining, which always stands at the workers' side ... what we've asked they have given to us, always for the benefit of our families and our children.

Carson: But before Rusoro's arrival, how were the conditions here?

Montiel: There was a Canadian company before in the other mine, Camorra ... in comparison it was not good.

Carson: Which one?

Montiel: Hecla, here close by.

Carson: Ah, Hecla. OK. That's USAmerican, not Canadian.

Montiel: Yes, that one, now it's in Rusoro's hands, too, and we're ... all the unions are getting together now to have a common voice within all of Rusoro's companies, we'll have an unification of unions.

Carson: Are there accusations of diverse human rights violations against Hecla?

Montiel: Yes, now the relations with Hecla ... now that it has been bought by the state company... they're going to bring in a project for a collective agreement to unify (and get) the same benefits that we've achieved.

Carson: But what have the problems with MIBAM (Ministry of Basic Industry and Mining) been?

Montiel: Yes, they've always (had) problems with environmental permits, explosives permits, the MIBAM has been tough from the government side, they've been tough in attacking transnational companies.

Carson: Did MIBAM offer money to miners for mining reconversion?

Montiel: What happens is, the company has been complying, MIBAM ... but it happens that new lists appear where there are people who are not miners ... and they are squeezing in, trying to take advantage of this moment when the state (with the transnational companies) are giving (funds) for the mining reconversion to mitigate illegal mining. To do that, we will include 250 new workers who will be incorporated into the company ... 250 direct workers to end illegal mining ... they'll become hired workers with benefits, with a proper, a dignified wage, with collaterals like the "cesta-ticket" to bring a good bonus for their children, that's what we have in this company from now on.

Carson: I'd like to know what were the problems with licenses' procedures for other companies. Why do you think they had those problems?

Montiel: That's a problem we have here from the part of the government. Last year we had a problem in which MIBAM and the environmental ministry froze the permits, I don't know why. We stayed home for six months, the company didn't have means to support us, they complied with paying a bonus because the government was blocking, didn't want to grant permits so we could start mining.

Carson: But why were those permits denied?

Montiel: There was a problem ... but I think that now, with God's help, everything's speeded up because the government is now in partnership with Rusoro Mining ... they have an agreement and they have to comply with it.

Carson: But what with the other companies?

Montiel: The other companies too, now the environmental permits for PMG, for La Increible, all those permits should be granted, should be speeded up because, as the President Hugo Chavez says that there's a partnership with Russia, we hope that it actually gets like he says.

Carson: But there were many problems with other companies, like Gold Reserve, Crystallex ... what do you know about that?

Montiel: Well, the information that I have about Crystallex is that it is a Canadian company that had that (problem) and didn't want to start the projects because of (ungranted) environmental permits ... but now I think I heard the MIBAM minister (saying) that a Russian company will come to work on the Crystallex fields, now, under the surveillance of the government the permits are produced faster. The place where we need to speed up permits is the area where there's the largest quantity of gold mineral, which is the one where Crystallex was. So, for the growth of the municipality and the Bolivar state, we need those permits soon.

Carson: But, isn't it a legal problem to take those contracts from Crystallex and grant them to Rusoro?

Montiel: No, I don't think so, they had plenty of time, they (Crystallex) were in the Stock Exchange, they were in fact waiting for the shares to increase their market value and never worried to get the permits legally. And meanwhile the illegal miners were working ... they had small pumps ... and there were problems with Crystallex because they were on private land and the private concessions must be respected.

Carson: And what about those others at Las Brisas?

Montiel: Brisas del Cuyuni is the same problem, they have a problem because it's divided by a river, a river flows through it, so they wanted to channel the river somewhere else ... then the government (denied the permits) because of the environmental problem. But I think that the problem at Las Brisas is about to be solved.

Carson: But the union supports Rusoro actions and not the others?

Montiel: Yes, we are now going with Crystallex, we are unifying all the unions, as I was telling you, all the secretaries from the unions are going to join to achieve an unification. Crystallex, Caolin, Hecla, Minera Nacional, PMG, we're going to sit together with Rusoro Mining's management. We want to sit with the directors, who are in Venezuela, to talk about some issues for the benefit of this municipality.

Carson: Why the problems with Hecla, were they not paying, what happened?

Montiel: The problems with Hecla were mainly due to some people there, some "gringos" that were there that used to treat the workers very bad, so the government had to intervene. There was mistreatment by the management, all gringos, mistreatment by the National Guard, that forced people to undress to frisk them like if they were prisoners, thereby violating the workers' human rights.

Carson: What about the future?

Montiel: Now (the future) looks normalized, it's calmer with the National Guard, they're helpful. We know that every company has its own internal security, we have to respect safety and security parameters and they have to respect our parameters as workers, we are clear about the areas were we're not allowed, we cannot get there and that's it, it's a matter of company standards in safety and security.

Carson: So, you know about the problems at Las Brisas and Las Cristinas. What do you think is the solution?

Montiel: Well, the solution is that there should be an unification where they should grant us the permits that we require, grant the permits so these companies can open their doors so there's employment, for the growth of the municipality, more collaboration with indigenous communities, collaboration with the community, the roads, the streets, build schools, because we need that the mining projects grow so that the municipality can grow. As there's more production we'll grow and stop being a small municipality.

Carson: I spoke with Andre Agapov and he tells me that he's not against Crystallex getting permits and agree to work with the government on a 50-50 basis.

Montiel: Yes, they should do that too, it's better for the workers for them to go 50-50 so the payment and the permits for explosives, the environmental permits and the drilling permits are speeded up.

Carson: This means that the union is part of the management. They're not apart.

Montiel: No, the majority of the workers ... the union is made up by the workers, not by management. We're workers that have fought to get the benefits we have achieved.

(Other voice): ... he means that union workers participate in decision making.

Montiel: Yes, they've always taken us into account. If they're going to invest this or that number of millions, we sit with thw management and we tell them about our problems and they tell us about theirs and the situation with the economy.

Carson: You mean that the problems for the future can be avoided if it can be achieved that the workers cooperate with management staff, no problems, no conflicts.

Montiel: Yes, there'll always be problems, but what we hope is that they comply with our demands so we can comply with theirs ... meet targets that we have agreed on, starting January 5 ... we have established goals, to unify, to get the production bonus when we start working in the mine ... this past year the investment was slow due to the stock market, but for the rest...

Carson: Will it be an unified union of all the small unions?

Montiel: We are ... the group has many companies, we've always concentrated but now in January, we'll unify, we'll sit with the group's directors to explain the situation of all the unions and, God willing. we'll see one single union for all of the group's companies, where we'll represent all the companies in this area. I'm in charge of the Southern sector, Corporación Ochentamil, Lamin ... at El Callao there's another union, they, with us ... they've achieved their objectives.

Carson: Do you keep in touch with them?

Montiel: We've had a good relation, they've achieved their objectives, salary increase and ... everything increases with the salary.

Carson: Thank you for the interview.

Montiel: Thanks to you, and we welcome foreign investment whenever it comes, and always count on us Venezuelans to be here supporting you to progress.

transcript and translation by
Franco Munini, a member of Tlaxcala


Venezuela is facing the most difficult period of its history with honest reporters crippled by sectarianism on top of rampant corruption within the administration and beyond, aided and abetted by criminal forces in the US and Spanish governments which cannot accept the sovereignty of the Venezuelan people to decide over their own future.

Community health care forum to be hosted by Olson

Olson has authored several health care bills in the Minnesota Legislature, including one to promote a small business pool for health insurance, but Tuesday’s forum will focus on national plans, not state plans.

The Obama transition team is asking for health care community discussions to be held between Dec. 15 and Dec. 31. The transition team will prepare a report from the discussions for Obama.

In the mean time, the forum “was specifically organized in response to a request that President-elect Obama made for community input meetings,” says Olson, DFL-Bemidji.

State Sen. Mary Olson would hold a community forum Tuesday in Bemidji, as part of a nationwide effort by President-elect Barack Obama to gain input on health care.

Health Care By and For the People

by Sarah van Gelder

The Obama transition team is asking you to help create a new health care policy. Really. Host a meeting, invite friends and associates, look at the Obama team's proposal, and let the transition team know what you decide. If you are among a lucky few, Senator Tom Daschle, Secretary-designate for Health and Human Services, may show up at your meeting.

This may be more important than it sounds. The key dividing lines over how to fix our country's broken health care system are becoming clear. It may take the same sort of grassroots involvement that got Obama elected president to keep the private insurance industry from hijacking the process as they have during previous reform efforts.

Here's one of the key decision points. The Obama plan calls for giving everyone the option of signing up for a public or private insurance plan. But according to The New York Times, the private insurance industry is lining up against that option. It's no small matter. According to a report released Wednesday by health policy analyst Jacob Hacker, having a public option could make the difference between a system that covers everyone and controls costs, and one that will continue to leave millions out while costs soar.

As Americans are painfully aware, our health care system is broken. 45 million Americans or more are without health care coverage. Half of all bankruptcies are caused, at least in part, by unaffordable health care bills. We're spending more—16 percent of U.S. GDP (gross domestic product) to cover 85 percent of our population, while Canada and France each spend less than 10 percent of GDP to cover everyone.

The harm to our economy of our backward health care system is especially evident today, as all three U.S. auto makers suffer from the competitive disadvantage of covering health care costs that their overseas competitors can leave to more effective government-run insurance programs.

Americans voted for change this November. But what system makes sense?

According to the research we did at YES! for our special coverage of health care reform, government involvement is critical. A majority of Americans agree—two out of three believe the government should provide national health care coverage, even if it would mean higher taxes. Other wealthy countries have adopted various methods, but a system like Canada's is one of the most efficient at providing good coverage for everyone while keeping a lid on costs. Under this system, the government is the insurer, but patients choose their doctors from private, public, or non-profit health care providers.

Having a public system is the way to cut bureaucracy and cost. But government involvement is where things get controversial. The private insurance industry opposes such a move. And some say that the switch to national insurance is too big a leap for Americans. People will be afraid to give up the coverage they know for an unknown system.

So the Hacker proposal, which was adopted in part by Barack Obama, may be the perfect compromise. Keep your private insurance if you want. But if you aren't covered, or if your premiums are too high, or your deductions and exclusions are too onerous, you can opt for the public insurance system. You would still choose your doctor. Subsidies would insure the plan is affordable to all. At the lowest income levels, it would be free.

Including a public system in our range of options is what it will take to control costs, and thus make sure everyone is included, according to Hacker. The private insurance industry has made a lot of money by excluding things that are expensive, shifting costs on to individuals and families by, for example, excluding pre-existing conditions, and working to write coverage only for those who are less likely to need health care. They have a big incentive to figure out how to exclude a treatment or test and little incentive to invest in our long-term health, since people tend to shift insurance companies over time. Their business, after all, is not keeping us healthy. It’s generating profits for shareholders.

Medicare has kept costs under control more effectively than either private insurance companies, or pools of private insurers, like those who contract with the federal government to provide health insurance to federal employees. According to Hacker's report, Medicare spending per enrollee increased only 4.6 percent per year from 1997 to 2006, while the cost of private insurance increased 7.3 percent each year during the same time period.

Innovations in the public sector have helped contain costs, and there are substantial additional savings to be had from better use of information technology, care coordination strategies, and databases of practices and outcomes, according to Hacker. And public health insurance agencies are in a better position to negotiate for reasonable prices from private health care providers.

The nonpartisan Lewin Group estimates that Hacker's plan would save the U.S. economy $1 trillion over 10 years, while covering 99.6 percent of Americans.

The Massachusetts system, enacted in 2006, is a stark example of what happens when there is no public option. Everyone in the state is supposed to be covered, but their choices are limited to private plans. Premiums have been rising 8 to 12 percent per year, which means the system will soon be out of reach of individual families, employers, and the state government.

A public option assures that there is a benchmark against which private companies must compete. Without such a benchmark, private companies have no incentive to contain costs or improve services.

It's hard to argue with giving people a choice.

But the health care industry is arguing. The New York Times says medical associations are encouraging their members to attend the health care discussion groups being organized by the Obama transition team around the U.S. Past efforts to reform the health care system stalled in the face of powerful health industry lobbyists with huge campaign war chests. Will the industry be as adept at dominating the health care policy discussion when it's happening in living rooms and coffee shops around the country?

Here's how President-elect Obama put it at his December 11 press conference:

Year after year, our leaders offer up detailed health care plans with great fanfare and promise only to see them fail, derailed by Washington politics and influence peddling.

If Obama is able to bring together ordinary Americans, who so clearly are desperate for change, and if they get as engaged in health care reform as they were in the bottom-up presidential campaign, perhaps this time we'll get the change we need. Maybe people power will overcome corporate power, and we'll finally be able to join the rest of the developed world who enjoy health care security.

So far, more than 4,000 meetings are scheduled around the U.S. Here's where you can sign up to lead a session. All the information you need is online, including the moderator's guide and instructions for reporting the results back to the transition team.

Note: If you are part of such a discussion, please let YES! know. We'd love to read your report and post a selection. Send us an email at editors [at] yesmagazine.org. Put the phrase "health care discussion" in the subject line.

Their Hollywood lifestyle turned to hatred and divorce... but 25 years later, a debilitating illness inspired an even deeper bondBy Glenys Roberts

Last updated at 12:44 AM on 13th December 2008

Our story began in the Sixties. His best friends were Michael Caine and Peter Sellers, Roger Moore and Princess Margaret. We holidayed in the South of France and weekended with the Queen’s photographer cousin, Lord Lichfield.

But it wasn’t Doug Hayward’s glamorous lifestyle that seduced me — I had just spent four years in Hollywood where I had seen a lot of high life. We bonded over an idealistic belief in the classless society.

Doug had proved it was possible for anyone to come from anywhere and make the most of their life. Brought up in a working-class home near Heathrow Airport, he went on to start a world-famous tailoring business. We married in 1970, had a daughter, Polly — and then everything went wrong. Perhaps it was the hectic pace of life, perhaps his obsessive work ethic. Or was it my determination not to be a stay-at-home wife?
Our divorce was bitter. We ended up in the High Court, and our daughter was made a ward of court. Though we continued living opposite each other and neither of us remarried, we barely exchanged a civil word for 25 years.

Then one day in 2004 he smiled at me in the street. ‘Has he buried the hatchet?’ I asked my — our — daughter.

‘Don’t be silly, Mother,’ she said. ‘He is becoming so dotty he thinks you’re someone else.’
Doug was diagnosed with dementiaWithin a couple of months my talented former husband had mysteriously blacked out and was taken to Accident & Emergency. Five specialist hospitals later there was a diagnosis. Doug — who had been so dynamic, so witty, so charming, so gentlemanly — had several sorts of dementia. He was not yet 70.
This ghastly disease is no respecter of persons. It strikes wherever it likes and each family has to deal with it as best they can. Doug had no close relatives other than my daughter, so I decided to support her early on by helping with his care.

But what had been a practical decision at the outset had a completely unexpected outcome. Dementia is often said to rob its victims of all personality. I didn’t find that. In many ways, my ex was still the same old Doug I had admired and fallen in love with.

When I first visited him in hospital, I had no idea what sort of a welcome I would get.

‘Do you know who I am?’ I asked him. ‘Yes,’ he said. ‘You are my former mother-in-law — but none of that matters any more.’ He could not find the right word for our relationship, but he wanted it to continue.

His illness often made him confuse his words, but with a little imagination it was easy to understand what he meant.

‘Can I get you on the “wild one”?’ he would say. He meant the mobile. ‘Where is the Moon?’ That’s what he called the house key because it caught the glint of the streetlight at night.
His vocabulary was quite charming, but there were many aspects of his illness that were not. The problems started as soon as he came back from hospital to the flat where he had lived alone since our divorce.

Already he was failing the MMSE — Mini Mental State Exam — which assesses capability based on the answers to questions such as ‘Who is the Prime Minister?’. Part of it was wilful failure — as a schoolboy Doug hated exams — but it didn’t change the facts.
He tried to light the bedclothes rather than the gas fireLeft to himself, he tried to light the bedclothes rather than the gas fire, and put food straight onto the burners on the kitchen stove without bothering with a pan. He scarcely knew his address any more, and couldn’t work out how to open the front door.

Yet he was determinedly independent and did not want to acknowledge any of this. Only recently he had been driving his car all over the country and as far as he was concerned he was going to continue. That meant we had to confiscate his car keys.
He hated this assault on his personal freedom and lost no opportunity to blame Polly and I. His aggression particularly upset our daughter.

She wanted to remember him as the supremely energetic father he had been, the life and soul of the party, the man who always had an amusing tale to tell, who knew the words to all the early Broadway and Hollywood songs by heart. To her, it seemed as if all the attractive parts of his personality had been excised, leaving him on a constant collision course with anyone who wanted to help him.

He couldn’t even take care of the new dog that had replaced his beloved Burt, a Jack Russell of some repute, who’d had his own Doug Hayward tailored jacket and obituary in the national press.
Doug felt he'd lost all quality of lifeBurt had been the runt of the litter, content even as a puppy to sit at home because he was allergic to trees and grass, thus perfect for an ailing owner. Jack, the newcomer, was an enormous, bounding thing who never sat still. He had to be rehoused and Doug concluded that was the end to any remaining quality of life.

He was so depressed that we did not have the heart to tell him he was never going to get better. He must have suspected it himself, so perhaps there was no point.

Some doctors, as well as most friends, seemed to take the view that he would be better off dead, but I couldn’t agree.

I tried to cheer him up by telling him doctors would one day discover a cure for Alzheimer’s and that I wanted him to be around to benefit when the breakthrough was made. We genuinely hoped it would come in time. But what was to happen to Doug in the meantime?

The choice was stark: he went into care or we funded 24-hour carers to look after him in the flat he loved, above the Mayfair tailoring business he’d created. He begged my daughter never to send him away, and so we decided he should live at home as long as possible — and, ironically, because of his frugal upbringing, we managed this.
In his heyday, Doug dined out on stories of his penny-pinching, which in his witty way he made seem utterly charming — an inevitable consequence of his working-class background.
We went as far as California for help - but found nothingIt meant he had saved what he earned for just such a rainy day, and my daughter, who had power of attorney, was determined to use his money for his benefit. His one extravagance had been top-of-the-range health insurance, so he could have the best medical advice the instant he needed it.

Not that anyone had the faintest idea what was the best way forward. Doug went as far as California and Barbados to try to find a cure while he was still able, but he found nothing.

Fortunately, we knew a brilliant Catholic geriatrician who shared my view that where there’s life there’s hope. Dr Keet’s answer to every problem was: ‘Keep your nerve and play it by ear.’

He was willing to come out at all hours, at a moment’s notice, to switch Doug’s medication and mastermind a cocktail of calming drugs alongside health supplements, including acknowledged brain food such as royal jelly and fish oil.

Doug was given Aricept, about the only drug that improves the memory of Alzheimer’s patients. The NHS refuses to provide it until a patient reaches the later stages of the disease. What a tragedy it is that they do not make the drugs we used routinely available to all dementia patients.

The NHS may do many good things, but it is difficult to understand why the diseases of the old are so underfunded when every drunk or drug addict who ends up in A&E on a Friday night is guaranteed sympathetic treatment.

Unlike drink and drugs, old age is not a lifestyle choice. Certainly, no one would choose to end their days as vulnerable as a newborn child — incapable of comprehension, of articulating their basic needs or controlling their bodily functions.

Doug couldn't tell us the problem, but he was terrifiedSo how do you find a reliable companion for someone in this state? At the start, we tried to save agency commission by answering adverts ourselves, only to find that private individuals are entitled to little information about prospective employees because of data protection.

In the end, we turned to a leading agency, on the basis they would never let us down. It was expensive, and although they found us several very good carers, there were some who were unsuitable — including one who seemed to be ill-treating my ex.
Doug couldn’t tell us what was wrong, but was plainly terrified of the man. Eventually, we found two wonderfully loyal carers who had worked for families we knew. We were fortunate, too, that Doug’s many friends were so helpful. They invited him to watch football on TV, especially when his team, Chelsea, was playing. They joined him at his gym, run by Annabel’s owner, Mark Birley.

Most lunch-times they took him to one of the many restaurants near his Mayfair shop. Doug usually rose to the occasion when he was in company, though his attention span was shortening.

He didn’t say much on those outings, but ate his favourite pasta and could even have a glass of wine. He liked to drop into his shop, too, and his eye for a well-cut jacket and his uncanny intuition were as sharp as ever.

Sometimes I took him to the cinema. We saw his friend Clint Eastwood’s Million Dollar Baby together. Doug, an avid movie fan, was still able to follow the most obscure plot and deliver an opinionated verdict.
We might as well still have been marriedSometimes we took him out in the car. He would sit next to me convinced he knew the way, ordering me to ‘Turn right, turn left’ and accusing me of being completely useless. We might as well still have been married.

Sometimes I took him for a walk in the park. Usually he loathed exercise, but once he struck out further and further only to bolt for home without warning, heading for the traffic. Doug, who had been a skilled footballer in his day, was still a strong runner. I only just managed to catch up and distract him in time. But our boldest idea was to take Doug, who loved the sun, back to the South of France where he and I had spent one of our first holidays together on Peter Sellers’ yacht.

Two years ago, my daughter found a house for rent near Nice where all Doug’s actor friends had holiday homes. We asked him whether he wanted to go — you did not tell my former husband what to do, even though he was ill. He said ‘Yes’ without hesitation, adding rather forlornly: ‘Do you think I can?’

That made us doubly keen — and determined nothing should go wrong. We planned the outing with military precision, invited a rota of my daughter’s friends to keep an eye out for him, and booked his doctor and the carer on our flight, just in case.

We reckoned without the August 2006 terrorist alert and all the added airline security procedures. In those first weeks you were not even allowed to take a lipstick on board, still less any liquid.

Doug, shaking with nerves, but still his old, proud self, refused to use a wheelchair, and stood in a queued for security for two hours without even being allowed a drink. When we finally got on the plane, he was in a foul mood. He hated the airline food, hated his seat, hated me for sitting next to him.
The holiday was a spectacular success
Then there was the first of many magical moments. We were just about to cross the coast of France at Antibes. Ahead lay the Mediterranean bathed in August sun. ‘Look out of the window,’ I said.

He looked grumpily down and then turned to me with a look of sheer childlike delight on his face: ‘I know where we are,’ he said. ‘He goes right out there and turns left and then he lands in Nice.’ He meant the pilot, and Doug was right.

The holiday was a spectacular success. He loved the bedroom my daughter had chosen for him because it was exactly like his room at home. He loved the garden, and for the first time in his life took an interest in flowers — which he asked to have planted in the garden of his English country house. We took him to lunch parties at the
beach and to all the old haunts.

Of course, there were nerve-racking moments. There was the time, five minutes after we arrived at the house, when he locked himself in the loo and we couldn’t get him out for an hour and a half.

There were the many times he tried to dive into the shallow end of the swimming pool and hated us for stopping him. Then there was the day he finally walked down the steps into the water with my daughter, launched himself into the pool and swam two lengths. Everyone burst into tears. We had never thought we would see him do that again.
When we returned to Britain, we planted the flowers he wanted in the garden of his country home near Henley, but Doug never saw them. He gave up spending weekends there because he saw frightening hallucinations lurking in the shadows.

Brought together by his illness
There was no use trying to dispute these visions — they were real people to him, and so we talked to them, as he did. On one occasion, our carer even laid the dinner table for the three make-believe women who seemed to keep him constant company.

Brought together by his illness, we spent the last four Christmases as a family for the first time since the Seventies. In the old days we used to spend them with Joan Collins.

At our first reunion, the cast list was the carer, the doctor, Polly and 12 firemen from the local fire station. They were there to cope with a fridge that had exploded after Doug — who had lost his sense of smell — failed to notice it had been leaking highly flammable ammonia.

And for the first time ever, I had managed to persuade Doug to come to the supermarket with me. He had never been a New Man. If there was no one to make a cup of tea for him, he threatened to leave home. In the old days, he had always overseen the festivities, on the principle that I would never get it right, and so he gladly rifled the supermarket shelves of poinsettias and mince pies, and was in a great mood.
We kept up the outings almost to the end. He sat in a seat of honour when Michael Parkinson was taping one of his last shows featuring Michael Caine and Tony Bennett. ‘None of us would know each other without Doug,’ Parky said. ‘He introduced us and we are all wearing his suits.’

I don’t think Doug cried, but I did. By then, he could rarely find the right words, despite knowing exactly what he wanted to say. Sometimes he even talked about his business. ‘Oh, I can’t say it,’ he would flounder in despair. Then I would voice what I thought were his sentiments. When I got it wrong, he was ferocious, but when I got it right, his relief was obvious.
Coming to terms with his disease
It even seemed to me that he came to terms with his disease after he bonded with a Nigerian part-time carer who told him: ‘We say in our village you must love every stage of life because even old age and illness has its compensations.’ You never know where help is going to come from.
This time last year, my daughter got married and Doug was in church with all the other guests. Then, on New Year’s Eve, which would have been our 38th wedding anniversary, I asked him out to a champagne dinner. Doug only ever did what he wanted, so when he accepted enthusiastically, it showed how far our relationship had come. In February, he started failing and finally had to go into care.

We decorated his room exactly like the one at home, and then I went away for a short Easter break confident he did not know anyone any more and had no idea of his whereabouts. Wrong. When I came back he was sitting in his chair with a tartan rug from his shop over his knees. ‘Where have you been, then?’ he said. It wasn’t so much an accusation as an acknowledgement.

He died three weeks later. But I could not have anticipated what happened next. ‘You take his ashes, Mum,’ my daughter said. ‘He’d like that.’

I put them on the piano he gave me in the old days. Then our musical tastes had differed wildly — he liked Thirties ballads, I liked Janis Joplin. This time I played him Rodgers and Hart’s 1935 love song with its wonderful refrain: ‘I know it’s over and yet... it’s easy to remember, but so hard to forget.’

3-year-old Payton Thornton finds hope in experimental stem cell transplant for rare skin disorder

By Brett Buckner
Staff Writer
12-07-2008

WHITE PLAINS — Payton Thornton wants what every 3-year-old boy wants — to play tee-ball and wear flip-flops in the summer, to have a puppy like the one in Old Yeller and be able to wrestle with his big brother.

But because of a disease with a big name, Payton is denied those things.

It's called epidermolysis bullosa, or EB. It affects about 20 out of 1 million births, but the most severe form, recessive dystrophic EB, which is the kind Payton was born with, occurs about twice in 1 million births.

Payton's parents, Joy and Reid Thornton, don't pay attention to statistics.

"The numbers don't matter," Reid says, as Payton balances like a gymnast between his knees. "Payton's tough, tougher than most grown-ups I know."

Children born with EB are missing collagen VII, a protein that helps layers of skin stick together. Friction — from a hug to a fall — can cause blisters the size of water balloons. His toes are "mittened," fused together and the same thing could happen to his fingers.

The lining of his stomach is fragile as butterfly wings. Simply eating an Oreo cookie could rip his esophagus. Payton gets extra nutrition through his "special bellybutton" — a port in his stomach connected to a feeding tube.

"That's where my milk goes," he says, tapping on his stomach. "But I can't really taste it."

If nothing is done to help his skin heal, he will likely develop an aggressive form of skin cancer. Children with Payton's form of EB rarely live to see their 20th birthday.

And yet Payton doesn't do without much.

A few weeks ago, his grandfather bought him a green, kid-sized four-wheeler. Though it's slower than the red one his older brother, Parker, rides, it "goes fast enough," Payton says. And he'll prove it … in the living room.

"It goes like this," Payton says, stretching out his bandaged arms and gripping the imaginary handlebars with tiny pink fingers. "VRRRrrrrrroooommmmm!!!"

Watching him race across the linoleum making motorcycle noises, it's hard to feel sorry for Payton.

But there are just as many bad days — days of four-hour baths to clean bleeding sores and of 18-gauge needles used to pop his blisters, there are the medications he takes to fight infection and the gentle hands in latex gloves that change his bandages.

Though pain is all he's ever known, hope is a lesson Payton is starting to learn … perhaps sooner than anyone imagined.


Time to wait
It was well after midnight in early November 2007, when Joy read the story about a 2-year-old with EB named Nate Liao.

On Oct. 19, 2007, doctors at the University of Minnesota transplanted bone marrow and umbilical cord blood, both rich in stem cells, from his healthy brother through a catheter in Nate's chest and into his bloodstream.

Within months, the boy's body was producing collagen VII. His scabs and blisters started to heal. The bandages came off, and he was eating regular food.

The procedure was performed by Dr. John Wagner, head of the pediatric Blood and Bone Marrow Transplantation Program and director of the Stem Cell Institute at the University of Minnesota.

Joy wanted her son to have the same transplant. So she began a yearlong siege of letters, e-mails and phone calls to Wagner's office. Last month, the family flew to the University of Minnesota where Payton was evaluated by the transplant team and accepted into the experimental program.

"When just looking at his body surface, Payton's case is obviously severe and worse than most I've seen," Wagner says via cell phone on his way to a convention in San Francisco. "But his overall health is good and strong."

For three days, the family toured the hospital and the bone marrow transplant wing. They saw the germ-free rooms where Payton will spend upward of six months because of the chemotherapy that will leave his body "profoundly immune suppressed," Wagner says.

But every room has a TV and a Wii game system, which impressed Payton almost as much as his first airplane ride.

Joy was overwhelmed to finally meet the doctor she'd read about and watched on Good Morning America talking about this miraculous new procedure to help kids with EB.

"It was amazing, just to hear someone talking about a cure," she says. "When we talked to doctors before, no one ever gave us any real hope. Dr. Wagner changed all that."

For as much optimism as this treatment has created, it's important to remain cautious, says Geri Kelly-Mancuso, a nurse educator for the Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA).

"I'm very leery of the word 'cure'," she says from her Cincinnati office. "If … there's a lot of ifs involved. If the procedure works for a specific subtype of EB with a specific mutation, it may not work for everyone with EB. But the good news comes in that the research is being done.

"Good news is rare for a disorder that disfigures and destroys so many lives."

During their visit, Payton underwent four biopsies to establish a baseline for his specific form of EB and to help find a cord blood donor.

But finding a donor wasn't going to be the hard part. The real fight was going to come from the insurance company, which was unlikely to cover such an experimental procedure. Wagner prepared the Thornton's for a lengthy process that he expected to last months if not years.

The transplant alone will cost $500,000.

"I knew, somehow, it would work itself out," Reid says. "We've been through too much to let money hold us back."

Three weeks later, on the day before Thanksgiving, Joy came home from dropping Parker off at school. As soon as she opened the door, the phone started ringing. On the other end was Karen Foster, transplant coordinator from Blue Cross/Blue Shield with incredible news.

Against all odds, they had been approved. Blue Cross/Blue Shield agreed to cover Payton's transplant.

"I was so excited and relieved," Joy says. "We were all speechless. Nobody saw it coming, and now it's all happening so fast."

Many more obstacles lay ahead, but finding an unrelated cord blood match for Payton won't be one. That will be "very quick," Wagner says, adding that it could take only a few weeks. But he doesn't want to rush.

"Could we go immediately to transplant with Payton? Yes, we could," he says. "We know we have good donors. We also know that Payton's in good condition — he's young and isn't malnourished as so many children with EB are. So I think we should delay for now; see what can be learned from the others who can't wait.

"Payton has time."

Wagner is quick to add that if for some reason Payton's health suddenly deteriorates, the transplant team is prepared.

"We're ready to go at any time," he says.

But this will never be a risk-free procedure. Wagner is honest about the real dangers lurking behind what so many are hailing as a miracle.

"There will be deaths," he says. "But the only reason parents see this as a real choice is because the disease itself is so bad. These kids can't have a normal life or a normal life expectancy.

"We know it can work. It just takes time … and funding."

That's the reality Joy and Reid continue to face. Before the actual transplant, Payton will have to make several trips back to Minnesota for more tests — with airfare alone costing upward of $2,000, which Joy and Reid have to pay "out of pocket" — not to mention the six or more months he'll have to live in isolation following chemo treatment.

But those are worries for another day. For now, they'll all go on living as normal a life as possible, which won't be a problem — at least for Payton.

Outside their house, where the open farmland seems to stretch on forever, Payton revs the engine of his four-wheeler. But he can only ride as fast as the rope in his father's grip will allow.

Trotting behind, ready to pull the motorcycle to a stop if Payton starts going too fast, Reid tries hard to keep up. But Payton never bothers looking back. He just grins and blinks against the cold breeze blowing in his face.

"He's really just like any other little boy," Joy says, laughing as Reid tries not to slip in the mud. "And that's all we want for him to be."